September 28, 2015. At 6:45 A.M., Mom, Stan, and I were waking up, and I wandered into the kitchen and started the coffee maker. Meanwhile, over at the CCH, Dad was setting off the bed alarm. When Connie, the night nurse, entered his room, she found him attempting to climb out of the bed. She lowered his knees to the floor and then called upon another nurse and an aide to help her get him back into the bed.
Because it was Monday, Dr. Smith was gone and Dad was in dialysis. Dr. Anderson returned as the attending physician. Mom and I had learned that he was returning and prayed that nothing would go wrong that would keep Dad from being discharged tomorrow.
So that I could visit with Dr. Concepcion, the nephrologist, before he left the CCH, I arrived at the CCH at 8:30 A.M. I also hoped to see Marty sometime during the morning. At 9:10 A.M., Jennifer, the RN who was training me, saw me in Dad’s room and called the dialysis room to let them know that I was waiting to see the doctor. He relayed that he would come down to Dad’s room to talk with me when he was finished with the dialysis patients. While Jennifer was still in Dad’s room, Dr. Anderson and Rachel, the nurse practitioner, stopped outside the door and talked. When they were finished, they both walked away without acknowledging my presence.
Dr. Concepcion and his fellow stopped by with hemodialysis and blood transfusion consent forms for me to sign on behalf of Dad. They told me that they had reserved a chair for Dad on the Tuesday/Thursday/Saturday schedule at 6:00 A.M., which was the only time available. It wasn’t the best time, but at least Dad should be home before noon. The doctor said that Marty would arrange for the ambulance service between home and the dialysis center. He also said that because Dad tested once for the Candida fungus, Dad’s nephrologist, Dr. Issac, would place an order to have Dad’s dialysis catheter replaced. If Dad was still at the CCH on Wednesday, they would dialyze him then and then again on Thursday so that they could establish his schedule.
After speaking with the nephrologist, I contacted Marty. She said that she had faxed signed orders for a variety of services and tube feed. She told me that American HomePatient would call me to schedule a time tomorrow when they could deliver and set up the equipment. After speaking with Marty, I returned home. Dad wouldn’t be out of dialysis until after lunch.
Moments after arriving home, Rachel called me. She said that she had just heard about our change in plans—most likely outside of Dad’s room. She said that the interventional radiology (IR) department would remove Dad’s PICC line while they replaced the dialysis catheter. She said that the nurses had been giving Dad Haldol in his IV at night for the last few nights, but that they would switch him to an oral version of the drug. She proceeded to give me another pep talk about the complexity of Dad’s care and the high risk involved. Similar to my many conversations with Marty, Rachel tried to dissuade us from our decision and admit him to a skilled nursing facility (SNiF) instead. I found this advice to be confusing. According to Rachel and the folks at the SNiF, Dad was not stable enough to be admitted, he was running out of Medicare coverage to remain in the hospital, and the VA could not admit another dialysis patient. We really didn’t have many options. The cynic in me wondered if they were trying to ensure that they weren’t liable for anything that happened to Dad on home care. I still hadn’t experienced the wonderfulness of this woman, about whom everyone at the CCH raved. She had never offered any assistance, solutions, or encouragement.
On the way to the CCH after lunch, Mom and I stopped by the Kings Daughters clinic to see Dr. Poteet’s nurse. Dr. Poteet had been Mom and Dad’s primary care physician (PCP) for a couple of years, but shortly before Dad entered the hospital, Dad had switched to Dr. Patil, another physician at the clinic. The reason why Dad switched PCPs had become a nonissue, and Dad wanted to switch back to Dr. Poteet. The doctor’s nurse wasn’t available, but we were able to start the process of reinstating Dad as one of Dr. Poteet’s patients.
Mom and I arrived at the CCH at 2:30 P.M. By the time that we got to his room, Dad had been back from dialysis for about an hour. He told me that he needed to know the details about the move and what he had to do. I ensured him that he didn’t need to do anything and then said a silent prayer that he would do as he was told and stay in bed.
When Jennifer, the physical therapist, arrived, Mom and I left the room and waited in the hospital’s front waiting room. While we were there, Dr. Anderson passed us and didn’t acknowledge our presence. That was the second time that day that he had totally ignored us. In the 147 days that we’d been in the Scott & White system, we had never met anyone like him. Even the busiest person would nod or wave when passing you in the hall. We couldn’t wait to be away from him and his negative vibe. He, along with some of the other doctors at this place, insisted that Dad’s “mental status was abnormal and that he had evidence of dementia and delirium.”
Jennifer’s assistant found Mom and me in the lobby and told us that Dad was in a wheelchair, walking himself around the hall. When Dad was finished scooting around the hallways, he wanted to get back into the bed, but Jennifer told him to stay in the wheelchair and visit with us. Victor, the respiratory therapist, came by and showed me how to change Dad’s trach collar. Although the trach was changed every week, the trach collar, which held the trach in place, was changed daily. The important part of this process was remembering to always keep one hand on the trach so that it didn’t slip out of Dad’s throat. After I had changed Dad’s trach collar without decannulating or choking him, Jennifer, my trainer, showed me how to check for residuals in the PEG tube and how to clean his PEG wound. She and a couple of aides then moved Dad back to bed.
Around 4:45 P.M., Marty called me and told me that the hospital bed and medical supplies would be delivered to the house tomorrow morning. She also said that the Home Health nurse would stop by in the afternoon to admit Dad into Home Care and show us how to use the equipment. She added that Dad’s dialysis chair time had changed to 7:00 A.M., but he had to arrive at the dialysis center by 6:40 A.M.
I emailed Becky Crabtree at One On One Personal Care and let her know about the turn of events. Instead of helping us to care for Dad until he died, her aides would help us care for him as he recovered.
Jennifer then received the call from Marty about Dad’s discharge, which was scheduled for tomorrow. We said our goodbyes and hugged. We had spent a couple of whirlwind days together and I was extremely grateful for her patient guidance. I could understand why she was one of Scott & White’s top nurses.
As Mom and I prepared to leave for the day, we told Dad that tomorrow was an important day and that it was vital that he stay in bed tonight to ensure that nothing prevented him from leaving. He said that he would and we prayed that he would.
During dinner, we received a phone call from a woman who introduced herself as Gale, our personal care assistant. She would start tomorrow around 9:00 A.M., and needed directions to our house. Stan, Mom, and I discussed the logistics of the next day and decided that until Gale arrived, the three of us would prepare the house and run errands. After Gale arrived, she and I would go to the CCH while Mom and Stan stayed at home to accept the delivery of the hospital bed and medical equipment. We knew that tomorrow would be a busy day, and we turned in early. I didn’t realize it at the time, but this would be my last decent night’s sleep for a long time. Before I went to sleep, I logged on to Amazon.com and ordered my first set of scrubs: purple. Among everything else that I had learned this past weekend, I learned that health care was a dirty job.
Shortly before 10:30 P.M., Dad set off the bed alarm and Cassy, the night nurse, discovered him attempting to get out of bed. She was able to convince him to stay in bed. With all of the drugs that he was taking, I couldn’t believe that he couldn’t sleep through the night.
I could sleep through just about everything, except a ringing phone.